Finally, an Update

I'm way overdue on updating blog followers how me and Parkinson's are getting along lately. I apologize for the delay. My focus over the last few months on getting licensed in Zumba Gold® and getting a class going in addition to the rest of life hasn't given me much time for this blog.

But I thought I'd try something new on the video blog front. I've been making videos and uploading them to YouTube. With advent of live streaming, I thought it would be cool to do my video blog that way so people would have opportunity to ask questions and interact in real time.

I investigated YouTube's live streaming, but it is more complicated than Facebook's. You have to download a third-party app to encode it and send it to YouTube, etc., etc., etc. They are working on building it into the YouTube app, but isn't out yet. With Facebook, you simply click a link and in seconds you're on the air.

The big downsides to using FB for this is, one, it will change the location of my PD videos, which are all on YT. Two, I'm unsure how well the FB video will embed in this blog. But, after wasting the morning hours trying to find and set up YouTube's livestream, I gave up and opted to give FB livestream a try. So we'll see how this works. Maybe once YT simplifies their livestream, I'll give that a go and evaluate.

At any rate, check out my first live-streaming video blog post. Don't know how this will work, but it may require you to log in to FB. If you're one of those few people without an FB account and you can't see it because of that, let me know in the comments and I'll see if I can find a solution for you.

Enjoy!

An Update

I'm way overdue for an update on how things are going. I've been trying to find time to do so over the past few months, but responsibilities kept getting in the way. As a result, I have so much to talk about, but I'll try to keep it pithy.

Amantadine

Last blog post I did, I talked about the drug Amantadine that my neurologist prescribed for me back in June. So I'm sure you've all been waiting with bated breath how it has turned out.

By way of remembering, this drug was prescribed to help me get rid of my dyskinesia (random movements resulting from using Sinemet and Azilect together, which for me was mostly head bobbing and left leg movements/toe curling).

When I first took it, it extended my dyskinesia from being a peak dyskinesia lasting about 2 hours, to extend it over most of the Sinemet dose, around 5 hours. Not good. But I remembered that my neurologist indicated I'd probably need to lower my Sinemet dosage, that I should experiment and find the right sweet spot of the mix of drugs for the best results.

So I cut my Sinemet dosage in half. That did result in losing my dyskinesia, but it also isn't as effective in controlling the tremors. The tremors weren't horrible, but sometimes get there between Sinemet doses. So it was a choice between having some tremors, or dyskinesia and very minor tremors.

The one benefit aside from that is Amantadine has helped my left hand to work better. It seems most effective, symptom-wise, in reducing my left arm's distonia (stiffness and muscle pain). That means I can type a little easier. That means, theoretically, I can do my writing easier. Which to a degree I have, though not a lot due to other high priorities on my to-do list. Because of that benefit, I've chosen to continue using Amantadine and put up with the tremors it leaves me with. For now anyway.

But the tremors are not all I have to put up with. There are side-effects, mostly minor. Increased constipation. More swelling of my left foot, especially if I don't get enough sleep. Slightly blurry vision, especially up close (that was happening before using the drug, which I think made it a little worse). A bit more sensitivity to light in my eyes; I've had a pair of prescription shades made to help deal with that while driving.

Thankfully, I've not experienced other side-effects which tend to cause some to stop using it. The most common is stomach upset. One of the more rare, but I know someone on a support forum who had this happen three months into using it, is hallucinations. No, that doesn't include my hallucinations of grandeur.

So for now, my prescription medications include Sinemet 14.5/50 mgs 3x/day (sometimes 4x/day), Azilect  1 mg 1x/day, and Amantadine 100 mgs 2x/day. That seems to be my best combo at this time, though not ideal. But I've yet to have a medication mix that is ideal--erasing all major symptoms.

CDP Choline

Another substance I've happened on lately is CDP Choline. A documented study showed the chemical compound increased dopamine production, as well as being neuro-protective, help cellular mitochondria perform better, and aided in improving memory function and/or slow the rate of dementia in those who have it.

It can be bought as a supplement. So I've been taking it in conjunction with Amantadine to help boost dopamine levels a little higher, as well as for its other benefits. So far, so good. I can't point to any specific noticeable symptom improvements, so if there are any, they are not particularly obvious. But I'm continuing to take it in faith that it is helping, and it may help fight the disease. I've also noticed no side-effects either, though the first dose or two, my body was adjusting to it.

I'm taking 1000 mgs 2x/day of it.

Inosine

Inosine is a substance currently proceeding to a stage 3 clinical trial, as noted recently on the Michael J. Fox Foundation's website. It has shown evidence of being able to slow the progression of Parkinson's. It and a cancer drug, nilotinib, are the two most promising substances currently in clinical trials, with solid hope of slowing this disease down. Currently, no drug has proven in clinical trials to be able to do so. Consequently, there is much excitement and hope in the Parkinson's community about these drugs.

The difference between the two is the cancer drug nilotinib costs currently around ten thousand dollars a month. Meanwhile inosine is available as a cheap supplement; a monthly supply is around ten dollars. That means I'd need a doctor's prescription and be rich to use nilotinib, but inosine is available and affordable now.

You'll note the cautions about using it on the MJF article about it. But the trials have shown it is generally safe to use. But since they've not revealed the ideal dose for safety and effectiveness yet, I figure sticking with the prescribed supplement dose will be safe until clinical trials show what the dosage should be for the most effective treatment. If the supplement dose is too low, at least I'll be one step ahead when it comes out in drug form, assuming it does.

So I've been taking it for a couple months now. No noticeable symptom improvements, but I wasn't expecting any as I'm taking it to slow the progression of Parkinson's and that is something I won't be able to know whether it is happening or not. Nor have I noticed any side-effects. I'm currently taking 500 mgs 2x/day of inosine.

Vitamin D3 and Zinc

My friend, Michael Strong, brought my attention to the link between vitamin D and cognitive improvement in diseases like Alzheimer's and Parkinson's. In my research, D3, when combined with Zinc and Magnesium, makes for an effective treatment for the prevention of dementia or the improvement for those with the condition. I was already taking magnesium, so I added a D3 and zinc supplement to my list of pills back in June.

I haven't noticed drastic improvements, but then again, so far I don't have dementia. That said, it seems I'm having an easier time thinking, especially in finding the right word to use. I still find myself struggling at times to find the word I'm intending to use, but now seems less frequent.

A word about dementia in Parkinson's. From watching a webinar on MJF website, and other research, there are two things I need to convey.

One, I've mentioned before that I've read 60% of Parkinson's patients will come down with dementia. But I qualified it saying it applied to those who start showing symptoms after the age of 60. I started showing symptoms at 51, so I don't fall into that category. But I recently read that overall, around 30% of Parkinson's patients will end up with dementia. So I wanted to give a more accurate picture of my potential to end up with that symptom.

Two, there are various levels of dementia, from minor to full-blown memory loss. The key thing to know is just because one has a minor dementia symptom does not mean they are destined to eventually have full-blown dementia. So suggesting that I might have some very minor cognitive difficulties as a result of this disease is not saying I'm destined to not know who my wife is at some point down the road.

Deep Brain Stimulation

I've discussed this before. My neurologist mentioned it to me two visits ago. At first I viewed it as a last resort, when the Sinemet no longer is effective in controlling my symptoms. After all, we are talking about sticking a probe down in my brain, and there is the risk of brain damage, however slight, to the process. So I was a bit squeamish about doing it.

But there has been a movement lately to do it earlier than later. One because it will be effective beyond the 5 years commonly quoted. It just means moving the probe on occasion to restore effectiveness due to the build-up of resistance over time to the electrical pulses around the probe. Two because if done earlier, it can eliminate the need for medicine like Sinemet, providing a longer quality of life. If done later, it only reduces symptoms and the amount of drugs needed to manage symptoms.

The prospects of being drug-free and somewhat "normal" again, allowing me to put more time and efficiency into writing, is very motivating. I'm now seriously wanting to look into this option. As a result, I expressed this desire with my neurologist back in June. He said the next step would be for me to see a Movement Disorder Specialist to be evaluated. So I indicated a desire to proceed. Strangely enough, I've not heard of anything happening on that front, or a referral being done. I need to check back with him, though my next appointment isn't too far off. In December if I recall correctly.

But there is part of me that would prefer a new procedure in development which is non-invasive using ultrasound and a MRI. Unfortunately, who knows how much longer it will be before it is widely available and approved by the FDA. The best I could do is find out how to sign up for a trial on it. Probably a long shot.

So, as I find out more about my chances for DBS, I'll let you know.

Exercise

I'm still doing my exercises I mentioned before: Zumba 4x/week, Pilates 2x/week, Hydro Fit 1x/week at my local Y. According to one instructor, I've become an inspiration to many there, probably along the lines of "If he can do that dealing with his disease, then why am I slacking off?" Apparently I'm talked about regularly as an example of someone not resigning themselves to defeat and fighting back.

Despite that schedule, I noticed my left arm especially, but also my right arm, losing muscle strength. A common result of Parkinson's as muscles deteriorate from constant movement of tremors and distonia. So I decided to up my game.

On the cardiovascular front, I've added a class called Body Step. Essentially an intense cardio workout using a bench you step up and off of in various patterns, in this case, synced with music. Much more intense than Zumba, which at first was exhausting but now only slightly so. It also works on strengthening the legs, obviously. The first time doing it, I was huffing and puffing after each song. Now, about 4 weeks into doing it, I'm still huffing and puffing, but I've noticed it isn't as exhausting as it was at first, so I'm improving.

Then to help the rest of my muscles, I've started going to Body Pump once a week. As you might imagine, it is a workout with weights set to music. Like Body Step, it is pretty intense. I'm using very low weights, and I've learned my weakest exercise is full lunges. So far, I've not been able to do them all, but I'm getting close. But I can tell already that it is helping my strength return.

So now my weekly schedule is:

Monday - Zumba and Pilates
Tuesday - Body Step
Wednesday - Zumba and Pilates
Thursday - Body Pump and Zumba
Friday - none
Saturday - Zumba and Hydro Fit
Sunday - none

This is one reason I don't have as much time to write as you'd think I'd have not having a full-time job. But I do believe it is making a difference in fighting back on this disease. So I keep at it.

The funny thing is, my son who goes with me to Body Pump (he likes weight lifting) is out of commission for a couple days, while I'm continuing to go, go, go. Of course, he's using more weight than I am, but still.

Disability

Not much to say here. Only that my wife has been wanting me to apply for disability for quite a while. I've done some research into it, discovered I could qualify. But I had to get my 2014 taxes done first. That finally happened last week, so Friday I applied. It will help since lately we've been pretty tight financially. Not having both of us working, and the added expense of my medications and supplements, has taken its toll.

It won't be until probably this Friday that I'll know the status of the application, and who knows how long before I know if I'm approved or not. Sometimes I know it can take several appeals. So keep me in your thoughts and prayers for a quick positive decision.

That's all for now. Time for me to go to critique group, after I get dinner in the crock pot, and after that, Body Step. Woot!

Medication Experimentation - Part One

When my doctor said he felt pretty sure I had Parkinson's, my initial reaction was sort of nothing. I had a passing awareness of the disease, that it caused tremors, but that was about it. I had no idea how bad of a thing it was, or not.

So naturally when I returned home, I hopped on the internet and started researching both Parkinson's, Essential Tremors, as well as Multiple Sclerosis. I quickly ruled out MS. But for a period of time I thought I might have ET instead of PD. But I began to realize the PD symptoms fit what I was experiencing more so than ET.

As mentioned before, I went a few months before deciding to take the Sinemet (a combination of Levadopa and Carbadopa that stimulates dopamine production in the brain to replace what is missing) to see whether or not it helped my symptoms.

With PD, also both ET and MS, the medical establishment doesn't know why people get it, except in a small percentage of cases (genetic and exposure to certain chemicals), nor is there a cure for it. It is a progressive disease. Currently, all doctors can do is treat the symptoms. There is one potential drug in the final stage of testing that has the potential to slow or halt PD progressing in some people. That is a few years down the road, however, and won't work on everyone. Right now, all doctors can do is prescribe medicine to manage the symptoms. The progression of the disease goes on, unchecked. Some even say the typical PD medications end up accelerating PD progression. Also medically, levadopa drugs like Sinemet tend to bring on dyskinesia with long-term use, which can be just as debilitating as PD itself. Michal J. Fox is a good example of someone with dyskinesia.

While other diseases can be more life-threatening, many of them can also be cured and the person eventually return to a normal life. Whereas with PD, the common saying is you don't tend to die from PD, but you die with it.

But when it comes to trying different things and "drugs" it also has its benefits. Trying out other things, as long as they are safe to do so, isn't going to speed up or slow down PD itself. Even deciding to take nothing isn't going to speed up the march to ending up in a wheelchair should one live that long.

I started taking the Sinemet in August of 2013. I took only that for about two weeks. During that time, it did seem my symptoms lessened, but I didn't get the "all back to normal" experience that some do with the drug. I heard about a potential alternative treatment: coconut oil. The lady who promotes this had a husband with Alzheimer's. He was getting worse. She learned about coconut oil's medium-chain triglycerides that can pass through the brain barrier (a barrier that filters out bad stuff from getting into the brain area) and provide energy lacking in those patients from the inability of the brain to produce its own energy from glucose. At least, that's the theory. It has yet to be tested in clinical trials, primarily because there is no profit potential for drug companies to do so, and no donations have been given.

What I've learned is that there is an abundance of theories of what causes PD and how to fix it. So one has to be careful, especially if they are selling something. But when it made sense to give something a try, why not as long as it is safe to eat/take?

So I didn't buy the lady's book, but our grocery store carried a decently priced jar of organic, cold-pressed, pure coconut oil. Most of them are expensive, but while still not cheap, we found a large jar for around $10. The LuAnn version didn't have the quality needed to assure it would have the MCT needed.

I started taking 4 tablespoons in my morning oatmeal. The lady recommended 8. Tried to figure out what else to put it in. Tried my fruit smoothie, but I didn't like it. Oatmeal seemed to be the only thing I could put it in and eat it. And 8 T was too much for one bowl. Plus, while I'd heard about all the health benefits of coconut oil, I didn't want to overdo it and end up with a heart attack trying to fix PD.

So I stuck with 4 T a day. If I noticed any significant improvement, I'd up it to 8, somehow. So for another two weeks, I took coconut oil everyday except Sundays and a few Saturdays. During that time, I did seem to improve, but I had no idea whether it was the coconut oil, or the cumulative effects of the Sinemet.

To find out which one was the help and to find out if a worsening of symptoms might confirm the Sinemet was helping, I decided to stop taking the drug. By the end of one week being off of Sinemet, but still taking coconut oil, my symptoms got noticeably worse. It verified two things. One, the coconut oil wasn't doing anything for my PD symptoms; it was all Sinemet. Two, it confirmed that the Sinemet was helping for sure. Another confirmation that what I had was PD.

So I wasn't surprised when my nuerologist confirmed I had PD. I would have been surprised if she'd said anything different at that point. That said, while the coconut oil didn't seem to help my symptoms, it was still possible that it did help mental sharpness. Since a percent of PD patients get dementia, and it is a healthy oil anyway, why not keep at it?

So, even to this day I still take 4 T in my morning oatmeal. It is hard to say how well it is helping, since I may not be experiencing the same mental awareness if I weren't on it, but there is no way to know that other than to get off it.

After two weeks of being off Sinemet, the symptoms, noticeably worse than they were before I took it, were getting difficult to deal with, especially while chanting at church. So on 9/24/13, I started taking it again, at least until the neurologist said to do something different.

But that wasn't the end of my testing things out. Even now, I'm trying something new. But I'm out of time and this is long enough for one post. So I'll have to continue my story later Until then.